The Worst Days.

As diabolically insane as this sounds, it’s sometimes all too easy to forget just how bad my Chronic Fatigue Syndrome can get. I get so caught up in the managing of day-to-day events like work and chores that I forget the reason why I manage these tasks so carefully, and then a relapse arrives.

I know it’s going to be a tough day when I wake up and can’t open my eyes. It usually takes several minutes and a monumental effort to finally prise my eyelids apart, and it’s rare that I can keep my eyes open for longer than a second or two. When Jarred switches the light on it feels like I’m looking directly at the sun, and usually aggravates the dull throbbing in my head. Even when lying down, my muscles feel fatigued and my joints ache, so much so that sitting up isn’t an option, and nausea ensures my constant discomfort.

Jarred will fetch me a cup of water and my medication from the kitchen, as often I cannot face eating anything for breakfast. Then, he will go about his daily business and allow me to sink back into sheets and fall asleep.

The sleep I get on these days is not restful, but is broken regularly by short spells of wakefulness before I drift off again. I will dream vividly as I lose track of time, and while the dreams I have when I feel this way are not nightmares, they’re not exactly pleasant either. Eventually, after approximately five of these dreaming sessions, I will wake up properly. I feel more alert and aware of the things going on around me, and my eyes stay open of their own accord. At this point I know I will not sleep for another few hours.

Jarred nips in and out of the bedroom between his daily activities to check on me, so I don’t normally have long to wait before he finds me awake. If I think I can stomach it, he will make me a small sandwich or a bowl of soup, propping up our pillows on the bedhead and lifting my shoulders, so that all I have to do is shuffle slowly until I’m leant against the pillows.

After eating, if I manage to eat at all, comes the hardest part of the day. My mind will be constantly active at this point, often focussing on tasks that I had planned to attend to that day, but my body simply can’t keep up. I grow bored and restless, but can do nothing about it. If I’m lucky I might be able to read a book for a little while, but even the smallest volumes make my arms hurt as I read. Often Jarred has brought through a simple board game likes snakes and ladders, which at least takes my mind off of my condition for a short while. Sometimes I will lean on Jarred, and he will practically carry me into the lounge where I can sit on the sofa and binge watch something on Netflix, but moving me from room to room is difficult for both of us.

As the evening closes in, Jarred will offer me another small something to eat, and will then sit on the bed with a basin of tepid water, washing my hands and face for me. By this point it is all I can do not to fall onto the pillows as Jarred lays them flat on the mattress, pulling the duvet over me as I lack the necessary strength to do this. It doesn’t take me long to fall asleep, but I will be plagued by spells of waking and vivid dreams for most of the night.

These spells can last for several days, or even for a week or two in particularly bad cases. They are undeniably strenuous for me, but also apply pressure to those around me. Similarly, the backlog of tasks not done often makes the recovery harder, as once I am able to turn my attention to them, I have so many to do that it is overwhelming. Fortunately, these spells are not common; as far as CFS goes, I’m one of the lucky ones.

M.E Awareness Week.

MEAW Summary

M.E Awareness Week 2018 runs from 7th to 13th May – here’s what you can look forward to on Diary of a Disabled Person:

25% of all donations received during this period will be in turn donated to the M.E Association, a charity supporting sufferers of the condition.

6th May; How bad can M.E really get? Find out in special blog post “The Worst Days”.

10th May; Q&A Session. Submit your questions about living with M.E on the “contact” page by 10th May, and I will try to answer as many as possible in a short video.

13th May; What are the most ridiculous theories about M.E? Find out in “The Many Theories of M.E”.

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